Newman

Autism awareness is vital, I’m a mum to a 22 year old autistic and I’m still learning. The two biggest things I’ve personally learned on my journey is to listen and to be patient. Listening has helped me to understand my son and his needs or reactions and then to articulate these to get him help or understood. The patience element is not about having patience with my son, but the lack of support or input from the services that are supposed to help, but don’t. You need exceptional patience for that!

It became apparent when he was young (before he started school) that he processed the world differently, he had rigid routines and absolutely hated change unless a lot of preparation was put in place to support it. He didn’t have tantrums, he had meltdowns, he was a very fussy eater (he still is), he never seemed to sleep (and still can’t) and he was hypersensitive to touch, textures, tastes and smells. Imagine your child grimacing when you gave him a hug because he didn’t like being touched. Only in the last year have I been able to have my first proper hug, the most natural way any of us want to comfort others.

As a parent whose child was not like everyone else’s I lost friends, I even had another mother saying they didn’t want their child too close to mine because it makes her child act autistic (by the way it turned out he was too). 

As a parent you feel alone, the only place to look for support or guidance is health services, and that takes years just to get a diagnosis, and once you’ve got it they really do nothing more, it’s merely a piece of paper.

In the meantime my son got excluded from primary school because of his extreme and often strange behaviour and was pretty much avoided by other children, so too was I by parents. For his whole school life this was our experience, I’m pretty hard skinned, but can you imagine what that does to a child.

He ended up out of mainstream school and in specialist provision with teachers who for the first time understood our daily challenges. This was the first time anyone beyond the family showed any sense of support or guidance. Throughout his schooling in specialist provision I, alongside teachers, fought to get him support from health services, we even social care, but sadly to no avail, the teachers instead became my guidance anchors as his mum. One comment from a health professional that we did get to see said that they’d met my son and ‘his intelligence was far above his age and that with that type of intelligence he should be able to find his own coping strategies’. Let me put that comment in perspective, my son is highly intelligent, almost an old man professor, but his social and emotional skills just aren’t there and that’s what we were hoping to get support with. He can’t cope well in some social situations, he gets easily overwhelmed and the world is overstimulating. The public masking he does to fit in and the private aftermath of that masking are two very different things. However, all of that aside, he’s determined. He’s at university now, but the support he’s supposed to get through the DSA is not in place (here we go again), and apparently according to the university that’s nothing they can help with, we have to take it up with the DSA. His second year at university (yes he’s done 2 years without support) was a bit of a disaster and he was allowed to repeat his second year of university with the premise that support would be in place from September (mainly a support assistant to help him organise his time and monitor strategies to prevent getting overwhelmed). After copious phone calls and chasing it arrived the middle of February this year, he’s behind, he’s broken and feels worthless, getting a degree was his dream. He was an A-grade student, he smashed his GCSEs and A-levels, proving his abilities are exceptional when the support is there, without support he struggles. 

In one of our last conversations he asked ‘what is wrong with me mum’ and I answered, ‘the problem is not and will never be you, the system to support people is broken’. 

We’ve spent a lifetime fighting for help, I even have friends treading the same frustrating path with their little ones today, absolutely nothing has changed in almost 20 years on. However I have changed, I’m Masters qualified in education and SEND, now focusing on my PHD in accessibility education. If there is something I can do, I can use my own experience to contribute to change, but also let other parents know they are not alone.